Anyone doing xelox and xeloda. Please help

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NHMike
Posts: 1439
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone doing xelox and xeloda. Please help

Postby NHMike » Sun Jan 07, 2018 5:00 pm

I've taken Xeloda before eating, on an empty stomach, while eating and after eating with no problems.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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peanut_8
Posts: 2231
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Anyone doing xelox and xeloda. Please help

Postby peanut_8 » Sun Jan 07, 2018 5:38 pm

It's important to take Xeloda up to 30 minutes after eating because food affects the absorption rate of the drug, not just aiding with reducing nausea.

Best Wishes,
peanut

edited to provide link

http://clincancerres.aacrjournals.org/c ... 1.full.pdf
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

weisssoccermom
Posts: 5853
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Sun Jan 07, 2018 6:26 pm

Actually, the Genetech website (manufacturers of Xeloda) clearly states,

"XELODA tablets should be swallowed whole with water within 30 minutes after a meal.
XELODA is a cytotoxic drug. Follow applicable special handling and disposal procedures.1 If
XELODA tablets must be cut or crushed, this should be done by a professional trained in safe
handling of cytotoxic drugs using appropriate equipment and safety procedures. XELODA dose
is calculated according to body surface area."


I would follow the advice of the manufacturer.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Hopegirl
Posts: 30
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Sun Jan 07, 2018 9:15 pm

weisssoccermom wrote:A few things to remember about Xeloda.

1. As others have said take it within 30 minutes after you eat. NEVER NEVER take it on an empty stomach. In addition, DO NOT take it with the meal.
2. Get OTC Nexium or another GERD like medication. When I was taking Xeloda, that was the FIRST medication that was going to be Rx'd but I was already on it. Tried taking it without it....OWWW!
3. One aspect of Xeloda that doesn't get much attention is the folic acid supplementation. First make sure you are NOT taking any folic acid supplements or even a multi-vitamin because (unless something is new) they all contain the recommended daily amount of folic acid. Remember that in the USA/Canada, our wheat is fortified with folic acid. This means that food items like: cereal, crackers, bread, pasta, rolls, etc.....the items we tend to eat with a queasy stomach.....all are fortified with folic acid. This doesn't mean that you can't eat carbs BUT......be proactive and read the labels. For example, most cereals are SUPER fortified with folic acid. Check your labels.....you will be surprised. What this all means is just that you have to be careful about how much of these foods you eat. Don't go eating a bowl of cereal for breakfast and then take your Xeloda....not a good idea. Don't eat cereal for breakfast, a sandwich for lunch, munch on some crackers and then have pasta for dinner.

BTW - reading your title....XELOX is, by definition, Xeloda and oxi. You may ask your doctor for a slightly different version of it.....one where you take Xeloda for 7 days, starting with day 1.....at the same day you get the infusion of oxi....then 7 days off of Xeloda. The difference is that you go in for the infusion every 14 days vs every 21 days.

Try getting an acid reducer and then watching your folic acid intake. Those two things together can make a world of difference.

I’m doing the 21 days one I guess. I go in every 3 weeks to get my infusion for 2 hours . Than same day I take my xeloda pills for 14 days straight than 7 days off . Taking the pills for 14 days straight is the part I don’t like . Sigh! I just don’t want to do the pills at all
Diagnosed 10/11/17 46 years old female 4 kids 25,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
Pray for NED always

Soccermom2boys
Posts: 178
Joined: Tue Nov 10, 2015 10:29 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Soccermom2boys » Sun Jan 07, 2018 11:34 pm

Hopegirl wrote: Taking the pills for 14 days straight is the part I don’t like . Sigh! I just don’t want to do the pills at all


Have you considered switching to FOLFOX? No pills needed for that one. Yes, you have a pump attached to you for 48 hours every two weeks, but it’s more manageable than it sounds. I personally am not a pill person, I did all of the Xeloda I needed to for new adjuvant chemoradiation, but there were times where I gagged getting those suckers down so I knew that there was no way I could do the Xelox route for adjuvant chemo. Just a thought. I feel for you!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

weisssoccermom
Posts: 5853
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Mon Jan 08, 2018 12:15 am

Hopegirl,
I feel your pain....I didn't mind the pills for the first say 10 days but those last 4 days....I just wanted to be done. It's the pills....the 5FU that is doing most of the work to help kill off the cancer so while you may not like them, they are necessary.
You could switch to FOLFOX but, IMO, I didn't like the pump and the side effects from the 5FU made me feel awful. I HATED the pump....with a passion....but then again, I twas doing the pump 24/7 during radiation which is a whole lot different than the 2 days/cycle you are hooked up to it.

All in all, patients tolerate Xeloda better than 5FU WITH the exception of the hand/foot but everyone is different. Your doctor would probably switch you to FOLFOX BUT....if you didn't tolerate that, I'm not sure if he would consider switching you back and forth. Talk with your doctor about reducing the dosage of Xeloda OR ask about the 7 day on/7 day off protocol. The people that I know who did that had no problems. Regardless of FOLFOX, XELOX 21 or XELOX 7.....your body won't be the same. You're going to feel the side effects of the oxi and/or the Xeloda whichever choice you make. I know you don't want to do any of it and you can quit....but the 'cocktail' is your best shot at beating this nasty beast.

Take it one day at a time. If you start to think about when you'll be done, how long this is all going to take, all the side effects, etc. you're going to drive yourself nuts. As for the hair thing.....your onc is right. You shouldn't lose your hair....you may thin but that's it. As for the neuropathy.....just be happy you don't have it yet. Count your blessings.

Good luck with whatever you decide.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Hopegirl
Posts: 30
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Anyone doing xelox and xeloda. Please help

Postby Hopegirl » Mon Jan 08, 2018 1:22 am

Thank you everyone for advise. I’ll probably stick with what I’m doing now . I just hate that first week of nausea n not able to eat or want to eat anything. And drinking liquids is hard too because it taste so nasty n with the cold sensitivity makes it worst n of course that first bite syndrome . And some depression not sure if any of you guys get it . Right now I’m mostly experiencing anxiety disorder. I hate that I have to take my Xanax right now just to calm down . I’m trying not to take it all the time I only take half of .05 milligrams. I hope it won’t be hard later to stop taking it when I finished. Just curious at what cycle did your neuropathy start for some of you guys . Or the hair thinning . Is it the infusion that’s making me so nauseous or the pills or both? 2 more days to go on the pills . Can’t wait for my 7 days break :D
Diagnosed 10/11/17 46 years old female 4 kids 25,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
Pray for NED always

weisssoccermom
Posts: 5853
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anyone doing xelox and xeloda. Please help

Postby weisssoccermom » Mon Jan 08, 2018 1:55 am

Hopegirl....if you are already experiencing the cold sensitivity and the 'first bite syndrome'.....you've already started with the side effects of oxi. Those are the first side effects to come. The definition of neuropathy is:

disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.

Since you've already gotten the cold sensitivity...the tingling in your fingertips/toes and possibly the tightness in your throat if exposed to cold....that's a form of neuropathy. The OUCH when you take that first bite is another manifestation of it as well. So, you've already gotten it. It will likely get worse and last longer with each progressive cycle. There's nothing you can do about it.

The oxi tends to make people nauseous but Xeloda can as well (although likely not as much). For the stomach upsets, as I said earlier, try watching what you eat and if you are eating a lot of starchy stuff....try and back off a little. That has been shown to be a problem in studies comparing people in Europe (where their flour isn't enriched and the USA/Canada where it is).

As for the hair thinning, I honestly can't tell you when it began. It was honestly pretty minimal. I was more aware of it than anyone else (except my hairdresser). It's not as though you have these obvious bald spots...just that your hair becomes a little thinner. If you have really thick hair, no one will probably notice.

Please try to calm down and don't over analyze things. Look at this as just something you have to do. No, it's not fun but its not permanent either. It will be over at some point. Regardless of which protocol you choose, there are going to be days when it just stinks! You push through it....turn on some Hallmark movies, read a good book, write some cards/letters to friends....do whatever you have to....but take it one day at a time. It won't be long until it's Valentine's Day and then Easter....the first day of spring and with the sunshine and nicer weather, with the birds chirping, you'll find yourself in a better mood.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Anyone doing xelox and xeloda. Please help

Postby Robino1 » Mon Jan 08, 2018 8:41 am

To get me through all of this, I look at it as the side effects are showing me it is kicking those cancer cell's ass. If it's doing this to healthy cells, it's got to be working on those bad ones too. (Don't correct me if I'm wrong, I need to believe this ;) )

Another mind trick is to keep saying 'this is only temporary'.

One good thing that came with the thinning hair, it took the gray ones first!!!! Sweeeeet!! :lol:

Find the positives and concentrate on those. I am doing the pump, yes it sucks wearing it for 2 days but damn! It sure is nice when I'm no longer tethered. I will be doing the pump until the cancer is gone or the 5FU fails. Failure is not an option on my radar. Even with the pump on I continue to go out and do things. I won't let it slow me down. It is doing a job that my body cannot on its own.

A determined fighting spirit will help get you through this. Imagine those pills dissolving and seeking out those cancer cells and kicking ass. Visualize them traveling to the intended target, if you can.

My thoughts and prayers are with you. You Can Do This!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Robster
Posts: 1
Joined: Sat Apr 07, 2018 2:38 pm

Re: Anyone doing xelox and xeloda. Please help

Postby Robster » Sat Apr 07, 2018 3:00 pm

Don't know if it's much HELP, but I'm finding that reading the experiences of others is a welcome reminder that the stuff I'm dealing with isn't unique. I'm nearing the end of Round 1 of 5 of CAPOX/XELOX - just enough to have found that it sucks, will suck more, and eventually may suck less. Sounds kind of grim, but nowhere near the kind of grim that the word "cancer" brought forth before I was diagnosed. I'm really blessed to have a fantastic caregiver at home and a varsity team at the med center.

"First bite" came as a complete (nasty) surprise after my first encounter with Oxaliplatin - may be easier to deal with next time now that I know it's coming.

Best and high hopes, all...

NHMike
Posts: 1439
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone doing xelox and xeloda. Please help

Postby NHMike » Sat Apr 07, 2018 4:04 pm

A friend asked me if I could just quit the chemo.

I explained the sequence of Neo-Adjuvent Chemo/Radiation, Surgery and then Adjuvant Chemo. I explained that the cancer was gone after surgery but that there was the possibility of stray cancer cells still in my body. I then explained what Stage 4 cancer is and then that the survival rate is around 12% or rather bleak. So the reason for Adjuvant Chemo was to prevent recurrence and spread. I then explained that one of my goals was to prevent permanent side-effects and that I'm doing what I can to prevent those side-effects while doing what I can to prevent recurrence?

Does chemo work? I had a look at the Total Neoadjuvant Therapy (TNT) paper and it's basically proof that chemo works. The results of TNT research indicates better results doing Neoadjuvant Chemo and Radiation, then Adjuvant Chemo is more effective than the Standard of Care approach of Neoadjuvant, then Surgery, then Adjuvant. I think that we need additional studies to confirm the initial trials but I can see the Standard of Care changing in the next couple of years. It's to the point where more wind up with PCR from just the Chemo alone and don't need surgery which means that they avoid loss of functionality.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

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horizon
Posts: 1462
Joined: Tue Apr 12, 2011 10:10 pm

Re: Anyone doing xelox and xeloda. Please help

Postby horizon » Sat Apr 07, 2018 8:39 pm

weisssoccermom wrote:Please try to calm down and don't over analyze things. Look at this as just something you have to do. No, it's not fun but its not permanent either. It will be over at some point. Regardless of which protocol you choose, there are going to be days when it just stinks! You push through it....turn on some Hallmark movies, read a good book, write some cards/letters to friends....do whatever you have to....but take it one day at a time. It won't be long until it's Valentine's Day and then Easter....the first day of spring and with the sunshine and nicer weather, with the birds chirping, you'll find yourself in a better mood.


This is great advice. I did Xelox for 6 months and 6 months just seemed impossibly long. I just kept telling myself "get through the next one that's all that matters".
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?


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